Andreea Beu
Pronouns:
Research Mentor(s): Irene Carter
Research Mentor School/College/Department: Pediatric Surgery Section / Medicine
Program: UROPF
Session: Session 3 (11:00am – 11:50am)
Authors: Andreea Beu, Irene Carter , Meghan Arnold
Abstract
The Prospective Multisite Study of Quality of Life in Pediatric Intestinal Failure works to understand the impact a pediatric intestinal failure diagnosis has on both the patient and their family, through a series of scale-based (0-never a problem, to 4-almost always) surveys on a variety of categories, such as social and emotional functions. Specifically, to understand the familial impact all parents/guardians were given the same survey, making an analysis of the parents’ responses most feasible. With regards to social functions, 4 questions were asked regarding isolation, support from others, and time for socialization. A general trend can be observed that appears to follow a normal distribution, with the most social isolation being recorded by parents with children between the ages of 8 and 12. However, despite a general pattern being seen, there is substantial variation between the social isolation recorded within, and between, the age ranges of the children, and variation in the quantity of samples in each range. Thus, it is difficult to make this conclusion generalizable to pediatric intestinal failure, or to any pediatric disease. This is further due to the sheer number of variables that are simultaneously, whether purposefully or not, being considered. Such may include the socioeconomic status and lifestyle of the parents, as certain professions generally lend themselves to busier schedules, or parents, as part of their personality, may isolate themselves, thus potentially creating a correlation between the social isolation felt and the lifestyle, rather than intestinal failure in the children. Furthermore, this study began during the Coronavirus pandemic, a time in which parents may have intentionally isolated themselves for the protection of themselves and their children, an observation noted by some of the parents themselves, creating response bias. Nonetheless, this study serves as a baseline for understanding the familial impact of a pediatric diagnosis, specifically with intestinal failure.
